I met two-year-old Jameson Golliday on a patch of lawn in Bloomington, Illinios. He had blue eyes, dark hair, and wore a striped shirt, shorts, and Crocs. He followed his mother, Jennifer, 31, as she pushed a wheelbarrow around the yard, picking up sticks. The neighbors were burning lawn debris and fly ash was swirling in the sky, big fluffy flakes, falling lightly all around us. Jameson’s brother, Shawn, 5, was wearing a Star Wars t-shirt and tossed a plastic sword to his grandfather. There was the bat-bat of plastic, and things quickly turned Galactic.

Jamie and his mother retreated to a quiet spot in the yard. She lets him run free in the backyard, but he can’t play with other children or touch high-contact surfaces such as playground equipment.

“It’s super sad,” Jennifer told me. “He sees kids off in the distance and points at them. I know he wants to interact.”

Jamie was born with X-SCID, or "bubble boy disease," which means he has no immune system. At birth he had no mature T-cells, the rugged soldiers of the immune system that sense and fight infections, due to mutations in the IL-2 gene on his X-chromosome, which rendered the gene non-functional.

David Vetter poses inside of his bubble in his Houston home (Associated Press)

David Vetter was the most famous bubble boy. In the 1970s and 1980s he lived in a bubble, using only items sterilized with 140-degree ethylene oxide gas. Doctors tried a bone marrow transplant from his sister to introduce working T-cells into his system. But the Epstein-Barr virus was sleeping in the marrow, and it triggered the growth of many tumors. Vetter died at age 12.

When Jamie was born he had a small cough, but unlike most colds, it didn’t go away, not for a year. His mom noticed a bump on his hip one day, which turned out to be a cluster of B-cells unsuccessfully trying to fight an infection. This clustering looked like cancer, and caused doctors to diagnose Jamie with diffuse B-cell lymphoma, which is very uncommon in infants. Later tests revealed Jamie’s illness for what it was—X-SCID.

In April 2012, not long after Jamie’s diagnosis, Jennifer and Jamie, then 1, took a medical jet to Cincinnati Children’s Hospital, so that Jamie could participate in a trial for gene therapy—a treatment that wasn’t available in David Vetter’s time. Jennifer improvised a ‘bubble stroller’ out of a rain tarp and a baby stroller, to transport him back and forth between the hospital and the Ronald McDonald House where they stayed in Cincinnati. Inside, he wore a surgical mask.

Jameson receiving gene therapy (Courtesy Jennifer Golliday)

Doctors drew some of Jamie’s bone marrow, and dosed it with a virus carrying the IL-2 gene. The virus serves as a tiny pilot, carrying the payload of the IL-2 gene into his cells, installing it in his genome. That gene builds a protein called a cytokine, which sends a signal telling T-cells to mature. Weeks after Jamie received his shiny new IL-2 gene, a blood test showed 13 mature T-cells per microliter, where before he’d had none.

The ash continued to fall. Jamie quietly colored with chalk on the driveway. Shawn’s grandfather was on the defense in the light saber fight, and the Galactic battle shifted to the front yard. Shawn had become oppositional since he had to leave school when a classmate became sick. He couldn’t risk bringing a cold home to his brother. But Shawn will soon be back in school. With Jamie’s T-cell count on the rise, he could cautiously explore his grandfather’s yard, loose of masks and bubble strollers,

Jamie still wasn’t allowed to interact with people outside his family. But still he romped up to me, and thrust his tiny arm skyward.

“What’s he doing?” I asked his mom.

“I think he wants to hold your hand,” she said.

The First Tools

In 1982, Richard C. Mulligan was at MIT when he deleted an element in a gamma retrovirus called psi, which was used by the virus to package itself to travel to new places. He gutted the virus of its contents, and in its place he installed a human gene. He had developed the first tool for genetic engineering: a virus with a one-way ticket to the human genome that could not move to a new address. It would sit tight and publish copies of the gene he installed, and its first task would be to treat X-SCID patients.

But problems soon arose. Mulligan had no way to tell the virus where to install. It might integrate near a cell cycle gene and boost the signal for cell division, leading to uncontrolled cell growth. By the year 2000, twenty X-SCID patients had been treated with the tool, but five of those patients developed leukemia-like conditions. One of those patients died.

David A. Williams, chief of hematology at Boston Children’s Hospital, was one of Mulligan’s post-doc students at MIT. By the time leukemia developed in the X-SCID patients, he was working at Cincinnati Children’s with Christopher Baum, and the two scientists thought up an elegant solution.

Genes have switches called promoters and enhancers that control when a gene gets turned on, and how strongly it gets expressed. It turns out that gamma retrovirus has very potent forms of these switches, and if, per chance, the virus installs near a cell cycle gene, those switches turn up the volume on cell division.

Williams and Baum deleted those switches, and installed a weaker version of a promoter. The theory was that even if the virus did install next to a cancer-related gene, it might not cause cancer.

Jamie Golliday was one of four children treated with the new tool in the U.S.

“I heard about success with early trials in England, and I thought, if he has a bone marrow transplant, he might have to have chemo anyway,” Jennifer says. “I was willing to risk it.”

It has been two years since the new group of patients began treatment with the “safer” gamma retrovirus. None have yet developed leukemia. “It’s still early,” Williams cautions. In the previous trials, it took three years for the first signs of a cancer to show up.

Jennifer Golliday took walks, she picked up sticks, sidewalk chalk and light sabers… and she waited.

Gene Therapy 2.0

Bluebird Bio, Inc’s chief scientific officer Mitch Finer believes that gamma retrovirus is the past. His company is now using a virus called lentivirus to deliver and install genes.

Despite a number of promising trials, the Food and Drug Administration still has not approved a gene therapy drug for market in the U.S.

Finer explained that Baum developed a test to show that lentivirus has a 30 to 100-fold reduction in causing cancer cells compared to gamma retrovirus. He also showed why: gamma retroviruses like to install near cell cycle genes, where they can switch on cell growth. That’s not surprising, since viruses naturally want cells to create millions of copies of them.

Baum found that lentiviruses, in particular a defanged HIV-1 virus, do not thrust cells into growth modes. Baum pinpointed where the lentivirus was installing, and it had no preference for cell cycle genes. So, Bluebird would hang its hat on lentivirus.

David Williams is preparing to supervise a trial with Bluebird using lentivirus to install a gene to replace a missing enzyme in patients with adrenoleukodystrophy at Boston Children’s Hospital. In 2009 researchers at San Raffaele-Telethon Institute for Gene Therapy in Milan, Italy performed a similar pilot study, and it and the virus stopped the disease in its tracks. Then last month, the institute reported success in using lentivirus to treat metachromatic leukodystrophy, another enzyme deficiency disorder.

But despite a number of promising trials, the Food and Drug Administration still has not approved a gene therapy drug for market in the U.S.

“What has been missing, oddly, is the ability of industry to come forth with large reproducible clinical trials,” Mulligan says. “Big companies were not interested, at least initially, in very rare diseases. This is honestly the reason things did not move faster.”

But Bluebird and several other researchers now have their eyes using gene therapy to target blood and immune system cancers, and even solid-state tumors. And cancer cures mean dollars.

With safe viruses that appear to be working, and the return of biotech investment after deaths halted research a decade ago, David Williams predicts the FDA will approve the first gene therapy drug in the U.S. within the next five years.

Jameson, bubble-free (Courtesy Jennifer Golliday)

Back in Bloomington

The Resistance was confident about its position in the light saber fight against its grandfather. Shawn chucked his sword into a tree, and sat down on a swinging chair in the front yard.

Ms. Baird, Shawn’s former preschool teacher, stopped by on a walk.

“We didn’t even know she lived in the neighborhood,” his grandfather said.

Shawn loved his teacher, and after leaving school, he became obsessed with hand sanitizer. “He’s just so scared he’s going to bring something home, and his brother is going to get sick and it’s going to be his fault,” Jennifer said. Shawn was afraid his mom would go back to Cincinnati and he’d lose her again. But since his mom returned home, Shawn’s been calming down.

Jamie hid his eyes when Ms. Baird approached. Jennifer’s theory is that he associates unknown women with nurses and expects them to poke him with a needle. Though he’s free of the bubble, Jamie still has a port in his chest, which nurses use to inject mature antibodies into his system, every few weeks, until his immune system's T-cells become strong and numerous enough to signal Jamie’s B-cells to produce those antibodies.

Shawn will begin kindergarten this month.. He sat quietly on the bench, thinking about school.

“I’m excited,” he said.

Jamie might even attend preschool on regular schedule, according to his mom.

But on this day, there was no school. The sky looked big, the yard ran forever, and Jamie was scribbling chalk on the sidewalk, exploring a world outside the bubble.

About the Author

Most Popular

Writing used to be a solitary profession. How did it become so interminably social?

Whether we’re behind the podium or awaiting our turn, numbing our bottoms on the chill of metal foldout chairs or trying to work some life into our terror-stricken tongues, we introverts feel the pain of the public performance. This is because there are requirements to being a writer. Other than being a writer, I mean. Firstly, there’s the need to become part of the writing “community”, which compels every writer who craves self respect and success to attend community events, help to organize them, buzz over them, and—despite blitzed nerves and staggering bowels—present and perform at them. We get through it. We bully ourselves into it. We dose ourselves with beta blockers. We drink. We become our own worst enemies for a night of validation and participation.

Even when a dentist kills an adored lion, and everyone is furious, there’s loftier righteousness to be had.

Now is the point in the story of Cecil the lion—amid non-stop news coverage and passionate social-media advocacy—when people get tired of hearing about Cecil the lion. Even if they hesitate to say it.

But Cecil fatigue is only going to get worse. On Friday morning, Zimbabwe’s environment minister, Oppah Muchinguri, called for the extradition of the man who killed him, the Minnesota dentist Walter Palmer. Muchinguri would like Palmer to be “held accountable for his illegal action”—paying a reported $50,000 to kill Cecil with an arrow after luring him away from protected land. And she’s far from alone in demanding accountability. This week, the Internet has served as a bastion of judgment and vigilante justice—just like usual, except that this was a perfect storm directed at a single person. It might be called an outrage singularity.

Most of the big names in futurism are men. What does that mean for the direction we’re all headed?

In the future, everyone’s going to have a robot assistant. That’s the story, at least. And as part of that long-running narrative, Facebook just launched its virtual assistant. They’re calling it Moneypenny—the secretary from the James Bond Films. Which means the symbol of our march forward, once again, ends up being a nod back. In this case, Moneypenny is a send-up to an age when Bond’s womanizing was a symbol of manliness and many women were, no matter what they wanted to be doing, secretaries.

Why can’t people imagine a future without falling into the sexist past? Why does the road ahead keep leading us back to a place that looks like the Tomorrowland of the 1950s? Well, when it comes to Moneypenny, here’s a relevant datapoint: More than two thirds of Facebook employees are men. That’s a ratio reflected among another key group: futurists.

Forget credit hours—in a quest to cut costs, universities are simply asking students to prove their mastery of a subject.

MANCHESTER, Mich.—Had Daniella Kippnick followed in the footsteps of the hundreds of millions of students who have earned university degrees in the past millennium, she might be slumping in a lecture hall somewhere while a professor droned. But Kippnick has no course lectures. She has no courses to attend at all. No classroom, no college quad, no grades. Her university has no deadlines or tenure-track professors.

Instead, Kippnick makes her way through different subject matters on the way to a bachelor’s in accounting. When she feels she’s mastered a certain subject, she takes a test at home, where a proctor watches her from afar by monitoring her computer and watching her over a video feed. If she proves she’s competent—by getting the equivalent of a B—she passes and moves on to the next subject.

Two hundred fifty years of slavery. Ninety years of Jim Crow. Sixty years of separate but equal. Thirty-five years of racist housing policy. Until we reckon with our compounding moral debts, America will never be whole.

And if thy brother, a Hebrew man, or a Hebrew woman, be sold unto thee, and serve thee six years; then in the seventh year thou shalt let him go free from thee. And when thou sendest him out free from thee, thou shalt not let him go away empty: thou shalt furnish him liberally out of thy flock, and out of thy floor, and out of thy winepress: of that wherewith the LORD thy God hath blessed thee thou shalt give unto him. And thou shalt remember that thou wast a bondman in the land of Egypt, and the LORD thy God redeemed thee: therefore I command thee this thing today.

— Deuteronomy 15: 12–15

Besides the crime which consists in violating the law, and varying from the right rule of reason, whereby a man so far becomes degenerate, and declares himself to quit the principles of human nature, and to be a noxious creature, there is commonly injury done to some person or other, and some other man receives damage by his transgression: in which case he who hath received any damage, has, besides the right of punishment common to him with other men, a particular right to seek reparation.

Even when they’re adopted, the children of the wealthy grow up to be just as well-off as their parents.

Lately, it seems that every new study about social mobility further corrodes the story Americans tell themselves about meritocracy; each one provides more evidence that comfortable lives are reserved for the winners of what sociologists call the birth lottery. But, recently, there have been suggestions that the birth lottery’s outcomes can be manipulated even after the fluttering ping-pong balls of inequality have been drawn.

What appears to matter—a lot—is environment, and that’s something that can be controlled. For example, one study out of Harvard found that moving poor families into better neighborhoods greatly increased the chances that children would escape poverty when they grew up.

While it’s well documentedthat the children of the wealthy tend to grow up to be wealthy, researchers are still at work on how and why that happens. Perhaps they grow up to be rich because they genetically inherit certain skills and preferences, such as a tendency to tuck away money into savings. Or perhaps it’s mostly because wealthier parents invest more in their children’s education and help them get well-paid jobs. Is it more nature, or more nurture?

The Wall Street Journal’s eyebrow-raising story of how the presidential candidate and her husband accepted cash from UBS without any regard for the appearance of impropriety that it created.

The Swiss bank UBS is one of the biggest, most powerful financial institutions in the world. As secretary of state, Hillary Clinton intervened to help it out with the IRS. And after that, the Swiss bank paid Bill Clinton $1.5 million for speaking gigs. TheWall Street Journal reported all that and more Thursday in an article that highlights huge conflicts of interest that the Clintons have created in the recent past.

The piece begins by detailing how Clinton helped the global bank.

“A few weeks after Hillary Clinton was sworn in as secretary of state in early 2009, she was summoned to Geneva by her Swiss counterpart to discuss an urgent matter. The Internal Revenue Service was suing UBS AG to get the identities of Americans with secret accounts,” the newspaper reports. “If the case proceeded, Switzerland’s largest bank would face an impossible choice: Violate Swiss secrecy laws by handing over the names, or refuse and face criminal charges in U.S. federal court. Within months, Mrs. Clinton announced a tentative legal settlement—an unusual intervention by the top U.S. diplomat. UBS ultimately turned over information on 4,450 accounts, a fraction of the 52,000 sought by the IRS.”

During the multi-country press tour for Mission Impossible: Rogue Nation, not even Jon Stewart has dared ask Tom Cruise about Scientology.

During the media blitz for Mission Impossible: Rogue Nation over the past two weeks, Tom Cruise has seemingly been everywhere. In London, he participated in a live interview at the British Film Institute with the presenter Alex Zane, the movie’s director, Christopher McQuarrie, and a handful of his fellow cast members. In New York, he faced off with Jimmy Fallon in a lip-sync battle on The Tonight Show and attended the Monday night premiere in Times Square. And, on Tuesday afternoon, the actor recorded an appearance on The Daily Show With Jon Stewart, where he discussed his exercise regimen, the importance of a healthy diet, and how he still has all his own hair at 53.

Stewart, who during his career has won two Peabody Awards for public service and the Orwell Award for “distinguished contribution to honesty and clarity in public language,” represented the most challenging interviewer Cruise has faced on the tour, during a challenging year for the actor. In April, HBO broadcast Alex Gibney’s documentary Going Clear, a film based on the book of the same title by Lawrence Wright exploring the Church of Scientology, of which Cruise is a high-profile member. The movie alleges, among other things, that the actor personally profited from slave labor (church members who were paid 40 cents an hour to outfit the star’s airplane hangar and motorcycle), and that his former girlfriend, the actress Nazanin Boniadi, was punished by the Church by being forced to do menial work after telling a friend about her relationship troubles with Cruise. For Cruise “not to address the allegations of abuse,” Gibney said in January, “seems to me palpably irresponsible.” But in The Daily Show interview, as with all of Cruise’s other appearances, Scientology wasn’t mentioned.

Some say the so-called sharing economy has gotten away from its central premise—sharing.

This past March, in an up-and-coming neighborhood of Portland, Maine, a group of residents rented a warehouse and opened a tool-lending library. The idea was to give locals access to everyday but expensive garage, kitchen, and landscaping tools—such as chainsaws, lawnmowers, wheelbarrows, a giant cider press, and soap molds—to save unnecessary expense as well as clutter in closets and tool sheds.

The residents had been inspired by similar tool-lending libraries across the country—in Columbus, Ohio; in Seattle, Washington; in Portland, Oregon. The ethos made sense to the Mainers. “We all have day jobs working to make a more sustainable world,” says Hazel Onsrud, one of the Maine Tool Library’s founders, who works in renewable energy. “I do not want to buy all of that stuff.”

The Islamic State is no mere collection of psychopaths. It is a religious group with carefully considered beliefs, among them that it is a key agent of the coming apocalypse. Here’s what that means for its strategy—and for how to stop it.

What is the Islamic State?

Where did it come from, and what are its intentions? The simplicity of these questions can be deceiving, and few Western leaders seem to know the answers. In December, The New York Times published confidential comments by Major General Michael K. Nagata, the Special Operations commander for the United States in the Middle East, admitting that he had hardly begun figuring out the Islamic State’s appeal. “We have not defeated the idea,” he said. “We do not even understand the idea.” In the past year, President Obama has referred to the Islamic State, variously, as “not Islamic” and as al-Qaeda’s “jayvee team,” statements that reflected confusion about the group, and may have contributed to significant strategic errors.